19 Jul Honoring Craniofacial Awareness Month:
A Look Back on Successful Patient Alexander Inclan
Alexander Suarez-Inclan still doesn’t realize he had surgery over four years ago. Although his eyes and face were characteristically swollen following his procedure, a few days later, the toddler was back to his normal self and never looked back. While he doesn’t remember any of it, his father does. Joseph Suarez-Inclan was anxious, of course, and admits, “It was a struggle.”
That’s because Alexander, born two months premature, developed craniosynostosis. This craniofacial abnormality causes a protrusion of bone that appears on the forehead and looks like the bow of a boat.
When the condition became apparent, Alexander’s pediatrician referred the father and son to Dr. Arno Fried of Advanced Neurosurgery Associates. At one year old, Alexander underwent surgery with Dr. Fried to correct the anomaly, and thankfully, it was a success.
In honor of all the Alexanders out there, we thought we’d take this opportunity to spread awareness during the season for recognition. July is National Cleft & Craniofacial Awareness & Prevention Month (NCCAPM), and Craniosynostosis Awareness Month resides in September.
Craniofacial Disorders and Craniosynostosis
Craniofacial disorders arise from abnormal development of the face and skull, resulting in a deformity. This can be due to a birth defect, disease or trauma. Craniosynostosis is a type of craniofacial disorder.
Craniosynostosis refers to the premature closing of the sutures of the skull. Sutures are the bands of fibrous tissue that connect the skull bones and serve to protect the brain and the face. Normally, a newborn’s sutures provide space for brain growth (this space appears at the site of the fontanelles, such as the soft spot on top of a baby’s head) so as it grows, the head maintains a symmetrical shape. However, if one or more of the sutures closes prematurely, the pressure causes the brain to grow in a way that creates an unusual head shape or distorted facial features.
Types of Craniosynostosis and Craniofacial Deformities
The brain is comprised of four sutures. If only one of them closes prematurely, it is called “simple” or “isolated” craniosynostosis. When two or more close, it is referred to as “complex” craniosynostosis.
There are various types of craniosynostosis, most of which fall into the “simple” category. The majority of “complex” craniosynostosis cases are called “syndromic,” as they are often associated with genetic syndromes.
A complete list of craniofacial disorders such as craniosynostosis and craniofacial deformities treated at ANA are below:
Types of Craniosynostosis
- Sagittal synostosis
- Coronal synostosis
- Metopic synostosis
- Lambdoid synostosis
- Syndromic craniosynostosis
- Apert syndrome
- Crouzon syndrome
- Pfeiffer syndrome
Types of Craniofacial Deformities
- Positional plagiocephaly
For a full description of each, read here.
It is not uncommon for babies to be born with abnormal head shapes. That does not always indicate the presence of craniosynostosis. The position of the head of the fetus or trauma at birth may cause an abnormality that will self-correct.
With craniosynostosis, however, the abnormality worsens over time. In fact, babies with these anomalies can appear to be doing well at first, which can cause parents to wonder whether surgery is necessary. If left untreated, the head could continue to grow abnormally and in some cases lead to increased pressure in the brain.
Surgery for this condition is often recommended. In experienced hands and with a strong team of experts, the results are excellent. In fact, in a 2017 analysis of surgery for craniosynostosis, the authors relate that the evolution of this surgery has progressed rapidly over the past two decades, with an even greater rate of success.
Timing of Surgery
Customarily, surgery is performed in the first year of life (sometimes even in the first few months) before the aberrant growth can make a more severe impact. The timing of the surgery depends on the type of craniosynostosis and the evaluation of the individual patient by a skilled pediatric neurosurgeon.
For example, in the case of Alexander Suarez-Inclan, his premature birth required a wait time to undergo surgery. The small and vulnerable baby, whose fate sent his father on an “emotional roller coaster,” is today a thriving five-and-a-half-year-old boy with model good looks. On his way to first grade, he enjoys playing soccer and hip hop dancing in his free time.
Now, his father says, “Everything is great,” but, he didn’t always feel this way. “Any child is fragile,” says Joseph looking back on Alexander’s surgery. “It was a struggle, but I got very lucky. I had a team to help not just with surgery, but with support.”
Joseph is grateful that Dr. Fried explained everything in detail before it came to pass, so there were no real surprises. “He was with me every step of the way. I could call anytime and with unlimited questions,” he adds.
In early 2017, Alexander went in for a checkup with Dr. Fried. Although Dr. Fried said Alexander no longer needs the appointments, Joseph does it for his own satisfaction. “If you don’t go, you don’t know,” he says.
Dr. Fried, who has spent an entire neurosurgery career treating children, completely understands. “You can bring him back whenever you want to,” he assured Joseph, “but everything is perfect.”
Watch Alexander Suarez-Inclan’s story below.